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Leigh Forbes

Leigh Forbes has Asperger's syndrome.
As well as managing her autism, she is a single mother to three young children, and runs a web-development business. Sometimes she copes with it all at once. Sometimes not at all.

Leigh was diagnosed in 2010, at the age of 40 - read her post-diagnosis post here. She founded Life on the Spectrum to show support for other adult aspies, and to raise awareness of autism through educational talks and training.

In her spare time, she climbs mountains, eats chocolate, and drinks too much coffee.

Last weekend I watched a boy, aged about six, standing on the chair in my local coffee shop (Costa, if you’re wondering): his parents just let him stand there, calling out, and clearly disturbing other customers. But I saw the anxious look on his face, and found myself relating to every flinch, shiver, and sound he made. It reminded me of a previous visit when, as an experiment, I took off my headphones, and exposed myself to all the input – my autistic world of the coffee shop – and wrote it all down as it happened. This is what I wrote:

There are people talking and laughing, cups chinking, a spoon stirring in sugar, the waitress clashing plates together as she clears a table, chairs scraping on the floor, someone’s dropped something with a clatter, the door opens and closes, the cold air comes in – in contrast to the heat in here. If I look up, there’s a glare from the spotlights that hurts my eyes, and a glare from the window too. I can taste my last mouthful of coffee, even though I’ve swallowed it: I can feel the smoothness of the milk, the sweetness of the chocolate sprinkles, the bitterness of coffee. There’s a man two tables away with a tuna panini. It reeks, even though he’s sitting two tables away, and even though I like tuna – like “rose-scented” air-freshener, the smell is too strong to be pleasant; it’s too much. Someone’s mobile goes off DIDIDUDA…DIDIDUDA…DIDIDUDADI. The barista bangs the coffee holder BANG BANG BANG, he grinds more coffee URRRRRRRRRRRRRRRRR, he froths the milk WHHHOOOOOOOOSSSSSHHHHH. A child is whingeing on the other side of the room, GRIIIIZZMMMWHAA. Someone opens a bottle of coke, FIIIZZZZZZZZZ. There’s hubub. There’s music. The woman at the table next to me is gesticulating as she tells a story to her friends, and I can’t keep her arms out of my peripheral vision; it’s distracting me, which annoys me because I’m trying to concentrate on writing this. This is why I sit in the corner – the other two sides of me are occupied by wall; they don’t move, talk, smell, or nudge their bags into my space. (You never catch me sitting in the middle of a public space.)

And this is just the physical external stimuli. What about the other stuff? I am feeling sad and grumpy about an earlier argument, and feeling inadequate because of the the mini meltdown I had as a result. I’m stressing about a complicated work project – not because I can’t do it (I can), but because I haven’t done it yet. My knuckle hurts where I skinned it climbing last night and I have a rope burn on my arm, which is sore (it drew blood). My neck is stiff, there’s caffeine buzzing in my head. I’m tired. I’m hungry.

All of this drags my attention. All of it all at the same time – or at least in the space of a few minutes, which is the same thing. Without headphones on (to cut out the sound part), it’s overwhelming – I don’t have time to process each input in turn, and I feel like I’m drowning in it; but with headphones on, a bit of sensory-processing space is freed to enjoy those aspects of Costa I like: the colour-scheme on the chairs, the comfy sofas, the warmth, the pictures (which are comfortingly the same in every shop), and most of all, the coffee – medium latte, with chocolate sprinkles – which I adore.

So when you encounter a “weird” boy (or girl) in your local coffee shop – standing on the chair being “disruptive” – take a closer look: Does he seem anxious? How does he respond to sudden noises? Could he be autistic? Perhaps his parents are not ignoring him, but supporting him – letting him manage in his own way until he can settle to the environment, which he did, given time. So, please consider congratulating them on his behaviour (I did), because he’s coping fantastically well.

Probably, yes. Just asking the question, “do I have Asperger’s?” is a strong indicator you’re on the autistic spectrum in our opinion. You’ve obviously done some reading or been talking to people about it already. You’ve probably identified some typical autistic traits in your own behaviour (or you wouldn’t be asking the question). You might have read blog posts and articles by diagnosed aspies, and found yourself saying, “I do that…” or “that’s exactly how I feel,” or “this explains everything.”

You are no doubt asking the “do I have Asperger’s?” question because you need to convince someone that you’re autistic. In that case, self-diagnosis is not enough “proof” for many people or organsiations: government, health services, schools, and many other (but not all) official organisations are unable (or unwilling) to accept you as “autistic”, without a formal diagnosis. Friends and family might have a hard time (and give you a hard time) accepting your self-diagnosis; They don’t believe you are sufficiently qualified to make the judgement (whereas in my opinion, you are the best person to make that judgement); or, you might not accept your own judgement.

There is nothing wrong with wanting, or needing, a formal diagnosis, even if the only person you need to convince is yourself. There are many more articles on this site to help with understanding the process, and deciding if it’s the choice you want to make. I would also encourage you to join one or more online autism-group, talk to other autistic people, and read some more. You might decide you want a formal diagnosis in the end, or you might decide you’re happy with your own assessment. Both are okay.

Having said all this, some autistic people, or parents/carers of autistic people, will reject you if you’re not as “bad” as them/their child, or don’t have a formal diagnosis. So please know, at Life on the Spectrum, closely identifying with other autistic people is enough to count as autistic. You and your self-diagnosis are welcome here.

Some years ago, I entrusted my only son, my firstborn and my friend, to another woman. Let’s call her Mrs D. She was the first teacher I had encountered as a parent, and I had no idea what to expect. I knew teachers deserved respect, and I determined I would not be a “problem parent” like my mother. I would let Mrs D get on with her job without interfering.

It was a small school – part of what attracted me to it, only three class teachers, plus classroom assistants, and a headmistress: all women, most in their late forties or fifties. Motherly, I thought, if not grandmotherly. How nice for the small boy; he never knew a grandmother. I needn’t worry about a thing.

He loved his first two weeks, appearing beside my bed dressed in his uniform at 7am every morning. He bounded out of class at the end of each day, full of what he’d been doing and the fun he’d been having. After a couple of weeks, the novelty began to wear off, but I’d prepared for that, and chivvied him along, asking him every day what was the best thing that happened. By Christmas, he was answering “lunchtime”. Then he started talking about being “bored”, and being “told off” at lot. Next I heard he’d been kept in at break time for “not completing his work”. He’s five, I thought, not fifteen. I spoke to Mrs D, but she said he had to finish his work. I shrugged it off. What did I know about class discipline? But more and more things began to niggle me: he started calling himself “useless”, and saying his work was “rubbish”. Then, at the end of his second term, he came out with “I hate school”. This was enough to break my heart, and I began to worry. Perhaps I should go into school and say something. But I didn’t want to cause a scene. I didn’t want my child to suffer because he had a “problem parent”. Hell, I knew how that felt.

So, distressed, I watched from the sidelines as Mrs D spent three years destroying my son’s confidence. She taught him phonics, maths, and phrases like “what’s the point?” I, the child of my own aspie mother (who never gave a second thought to marching into school and making my life hell by proxy), was torn. I didn’t know what to do.

Mrs M, whose class he moved into next, was a good teacher. A nice woman too. I liked her. The small boy liked her. But still there was something missing; he would come home saying he kept getting told off, but didn’t know why. I spoke to the SENCO about autism – her reply? “I’ve seen a lot of children with autism, and I can assure you, your son’s not one of them”. I had no answer. I’d only been recently diagnosed myself, and I didn’t want to cause a fuss. So nothing changed. Meanwhile, I watched while Mrs D began to destroy the small girl’s confidence too, and with my even smaller girl due to start the following autumn, I knew I had to do something.

After facing up to the agonies of a change I didn’t have to make, I got the smaller girl on to the reception-class intake-list for another school, and her sister (desperate to stay together) won a place on that basis. Mrs M persuaded me to leave the small boy with her; he’d grown up with his classmates, she said. They all knew his little ways (not that he’s autistic or anything). He was “doing well”. I gave in. I always was a sucker for guilt-trip tactics.

The girls flourished at the new school, and within a term it became obvious my son needed to be there too. I reconsidered Mrs M’s remark about him having grown up with his classmates… but actually he’d been through toddler group and preschool with the kids at his sisters’ school – he would have friends to welcome him. It could be done. To minimise the disruption, I wanted to leave it until the end of the academic year, but a place became available after Easter, and I had to jump. Stressful? I can’t begin to tell you!

He had seven terms at that school, and although we had little dips and bumps along the way, the two teachers who taught him gave him the confidence to aspire, to be himself. And by validating his autism, accepting him, and managing his issues without needing to apportion blame, they gave me the confidence to stick up for him. He’s now approaching the end of his first term at secondary school (where the SENCO said his autism was so obvious she didn’t need him to have a diagnosis to be on the special-needs register), and is continuing to develop his self-reliance, his responsibility, his confidence.

So, to Miss P and Mr R, I want to thank you. Between you, you rescued my son from a pit of academic despair and managed to prepare him for secondary school in only two years. It brings tears to my eyes to think of the change you worked on him. The work you gave him was harder, the challenges greater, yet in those two years, he often came home from school enthusing about what “a great day” he’d had. You inspired him to learn – which is all a parent can ask. You also took on his autism with a fearless calm. His oddness was not a problem for you, and you spoke gently to me about any issues there were. You didn’t make me feel like I was making it all up; you helped me to help him. As a result of all this, he is not only coping at secondary school, he’s doing well. And I sincerely thank you for that.

I am vexed at how the word “meltdown” is being slowly hijacked by the general population, and used to describe someone having a massive tantrum. Let’s be clear right from the start: an autistic meltdown is not a tantrum. Not even remotely. Not ever.

A tantrum is defined by Chambers (12th ed.) as “a sudden fit of childish, uncontrolled bad temper or rage”, and has the synonyms: temper, rage, fury, storm, outburst, fit, flare-up, blow-up, scene, paroxysm, paddy, and hissy fit. A tantrum is what people (aged two onwards) have when they’re angry about not getting their own way.

What is a meltdown?
Firstly, let me tell you what a meltdown is not: it is not a tantrum, a hissy fit, or a mere loss of emotional control – any emotions I experience are the result of the meltdown, not the cause of it. In reality, it goes much, much deeper than that: for me, a meltdown is a processing failure, like when a computer becomes overloaded with too many instructions, and goes haywire. A meltdown is a loss of cognitive control – I can no longer think. If we use the analogy of an epileptic fit as a hardware problem, a meltdown is the software equivalent.

What triggers a meltdown?
Many of my stress-triggers are the same as neurotypical people’s (fatigue, illness, hormones, hunger, conflict, etc.). Then add the autistic stressors that neurotypical people somehow filter out: noise (particularly sudden loud noise), bright lights (particularly flashing ones), visual clutter (e.g. too much mess, traffic, people), frenetic activity, unwanted physical contact (including from my own clothes), change of plans or some other disruption, all the noise in my head, etc. Throw too many of those at me at once, and I just cease to function.

Sometimes, it might look like the meltdown has been triggered by my not getting my own way, e.g. disruption of my plans; but in that case, the need to work out how to manage my day differently from how I’d planned (in order to accommodate someone else’s plans), on top of all the other things I’m trying to manage, becomes the final processing-request that freaks out the computer. It’s not that I’m unwilling to engage with the idea, I just can’t process it. Not at the same time as everything else.

What does meltdown feel like?
For me, the only emotions I feel during meltdown are extreme frustration, panic and fear. I am not angry – not in any way.

I am frustrated by not being able to function properly (often because I’m failing to understand something, or make myself understood), panicked by being overwhelmed, and I am scared because I can’t work out what just happened, what is happening now, and what is going to happen next. It’s not just that I can’t think straight – I can’t think at all. To begin with, the words I speak might stop making sense. I might roar, scream, shout, and/or cry. I might pace about, and rarely I might throw things or hit things (only things, never people) – but even then… even if I appear to be in a rage… let me say this again: I am not angry.

Alternatively, I might go straight to the secondary stage (which I call ‘shutdown’ – like when a computer freezes altogether), where I can no longer work out how to speak or move. In this stage I will curl up in a ball and become mute. I will probably close my eyes, put my fingers in my ears, and want to cover my head. I’m trying to shut it all out.

So you see, a meltdown is not a tantrum, and a tantrum is not a meltdown. They are totally different things. This is not to say some autistic people don’t have tantrums too, but it’s vitally important to know the difference.

A tantrum is a hissy fit, where the person is acting out his/her feelings of being hard done by. A meltdown is a loss of executive function brought about by cognitive overload, or in more simple terms – I am temporarily unable to do anything that involves thinking, i.e. reason, remember, plan, problem-solve, or perform tasks: there is only chaos in my mind.

How to help me during meltdown (any hopefully other aspies too)

Please don’t panic – meltdown is a temporary state (like an epileptic fit), and I will recover.

I don’t need a doctor or medication – all I need is peace, quiet, and time.

If possible, get me to somewhere quiet – preferably with subdued lighting or no lighting at all. I will recover most quickly in silent darkness!

If there is a window, please close the blind/curtain.

Please do not touch me (very important).

Please ask other people to stay away, and try to ensure no one comes bursting into the room.

Please ask “what can I do to help?” but don’t press for an answer; some of us become mute in meltdown.

A glass of water will probably be welcome.

Please don’t offer or ask me anything else more complicated – I won’t be able to process the question.

You are dealing with a highly intelligent adult, so please resist any temptation to speak in a sing-song voice.

Please stay with me if you can, but at a distance, and please don’t try to make small-talk; this will seriously delay my recovery.

Bear in mind that once recovered, I will be exhausted (and possibly embarrassed), and will probably just want to go home. This is okay – once I am functioning again, I am perfectly safe to leave on my own.

I might not be able to express my thanks effectively at the time, so please don’t be offended if I simply walk away. I will be enormously grateful for your care and understanding.

This is a very personal subject, and one that’s close to my heart. Thank you for reading to the end.

The author of this post is a reader of this blog, who has asked to remain anonymous.

Taking the bullying survey came as something of a shock to me. I know I was bullied at school, but I hadn’t realised the extent to which bullying has been part of my whole life.

As a child I was bullied both physically and psychologically by my parents. I am a child of the 70s so smacking was just part of life for pretty much every child I knew. I do clearly remember one occasion though in which the level of violence seemed extreme: I would have been 8 or 9, and my mother administered a slap to the top of my leg. As I was stood in the bath having my hair washed at the time, the combination of wet skin and hard slap left a clear hand shaped welt mark for quite some time. I think the level of violence shocked me more than anything because of my nakedness – I was utterly defenceless.

When I was very young, maybe 3, I was having the mother of all meltdowns, so my dad thought putting me in my nightdress, under a cold shower would snap me out of it. I presume the shock must have worked. Funnily enough I have a strong aversion to baths and showers, and have to force myself to have them, even now as an adult.

My uncle told me that he had to rescue me from the understairs cupboard which my mother had locked me in, on at least one occasion. I was very small then, and have no memory of it. I do though suffer from claustrophobia, but bizarrely, find comfort in times of distress from squeezing myself into small, dark corners.

I have been bullied by other family members over the years too. My maternal grandmother was a particularly unpleasant woman, she felt it perfectly acceptable to never get my name right and to make very nasty comments about my physical appearance and my character on a regular basis.

Two of my uncles thought it was hilarious to make me the butt of their jokes at family gatherings.

One of my cousins delighted in taking the mickey out of me in front of her friends and enjoyed excluding me from their clubs and games, even though this clearly distressed me.

School wasn’t ever a great place to be, I was teased because of my unusual name, as well as the physical features on my face that made me a prime target as soon as I was looked at.

We moved a lot, and each new school experience brought more of the same. I always made one or two good friends, usually other outsiders or the class underdog who I often felt it was my duty to befriend, support and protect.

At secondary school things became much worse. My parents had decided to send me to boarding school, and when this became common knowledge I was a snob, stuck up etc etc. Of course I deserved to be chased home from school with the threat of a good beating; to have my tormentors shout abuse from outside my home after school; to have to watch my back and close my ears to the abuse that was hurled at me day after day at school. My good friend at the time, who my mother thought was a bad influence as she lived on a council estate and had a father in prison, went out of her way every day to take me to school and back, affording me a degree of protection. The school never once tried to stop any of this.

I didn’t want to go to boarding school, and tried everything I could to get out of going. On the morning of my entrance exam I refused to get out of bed, so my father physically pulled me out of bed, ripping my thumb in the process. I still have the scar. Trying to deliberately fail the entrance exam didn’t work, and so I was packed off to be a termly boarder, despite only living 20 miles away, and having the offer of a lift home every weekend from another parent. No, my mother had been trying to pack me off since I was 7, so there was no way she was going to lose the opportunity to be rid of me for the longest period of time possible.

School was horrible. My accent was wrong, my looks, my personality, the same old same old, only this time with added class war. I was left alone in the dormitory at weekends as my room ‘mates’ were invited home with their weekly
boarder friends for fun and adventure, all of which they filled me in on in glorious, crowing, technicolour detail on their return.

Eventually, as so often happens, the bullied became the bully, although I wasn’t very good at it, and after being given my one and only telling off by the headmistress, I stopped, and didn’t become a repeat offender. Instead I grew a thick shell, and became known as a cold bitch instead.

My first boyfriend was a bully – sexually, physically and psychologically – I didn’t think I deserved any better. I had already been sexually abused at a party, which again I felt I deserved – I was so socially inept that I drank myself stupid, was too scared to ask where the toilet was and vomited where I sat. I was taken to the bathroom and cleaned up by the host, who then took me to her parents room to sleep it off. I remember coming round to find someone’s fingers inside me, then promptly passed out. At 13 a family friend had tried to have sex with me whilst his sister was in the room and our parents were downstairs, thankfully he was pretty easy to push off, physically, but that same person has, over the years, played mind games with me on a huge scale, and yet I still find myself desperate for his approval and affection.

Once school was over the world of work beckoned. I didn’t fair so well there either, my poor executive functioning got me into trouble on several occasions and a personality clash with a senior member of staff left me sidelined, belittled, mocked and berated on an all too regular basis.

I left home and moved in with my boyfriend at 17. His mum was lovely to me, and I couldn’t believe how different a family could be. Unfortunately the relationship developed problems, and we both started to veer dangerously close to violence out of frustration with our inability to communicate effectively. We managed to stay friends though, and he has been a positive influence in my life in many ways.

Work continued to be difficult for me – I cannot abide injustice, and have walked out of two jobs in protest at how poorly others were treated. Sadly I have never experienced that same kind of support in return. Eventually I grew up a little and realised that shit happens and sometimes you just have to put up with it. That attitude saw me stay in a job in which I was sexually abused on an almost daily basis, by my boss and some customers, for nearly 7 years. Yay me!

My mother continued to deal out psychological bullying, even once I became a mother and a wife. Eventually I had enough, and just short of my 30th birthday I stopped communication with her. As a result my father attempted to get my aunty and uncle, who were the only relatives who supported me, to stop talking to me so that I would be all alone and have to see sense! During that period I had several letters from relatives telling me what an awful person I was, how my parents had only ever done their best for me, and that I was an ungrateful brat who was clearly in the midst of some kind of mental breakdown. I don’t believe that to be true, but only because of the support of several people who have known me well for a long time, and have witnessed my mother’s behaviour towards me first hand, were it not for them I think I would believe it was all my fault.

I met someone who I thought was a good friend during this period, but unfortunately things didn’t work out so well. She thought it perfectly acceptable to ostracise me from the ‘community’ I belonged to – telling people I was a liar, a fraud and countless other stories, all of which were false. A few people stuck by me, but many told me privately that it was easier for them to side with her. One person who kept up a friendship with me on the quiet, was, when found out, also ostracised as a lesson, which affected her daughter’s friendships. She was very apologetic, but had to think of what was best for her child, so that friendship was, to all intent and purpose, ended because of a vindictive, insecure bully.

It hasn’t stopped there. But to be honest, it’s too depressing to go on. I have been intellectually bullied and derided for having strong morals and opinions. I have been sexually bullied just because I was an easy target. I have been psychologically and physically bullied by those who were supposed to love and protect me. Is it any wonder I prefer not to allow myself to get close to people? That I shut myself off the instant I find myself feeling that a pattern I have lived with for as long as I can remember is starting to be repeated?

My husband says that people probably don’t mean what I take them to mean, that it is more likely that I feel harsh intent because I have become so used to experiencing it and so can’t see anything else. I’m torn between thinking he has a point and wanting to scream that it is not just me being ‘overly sensitive’ again.

The biggest problem though is my internal bully. There is no escape from her, and as she loves to echo the insults, torments and failings that have plagued me my whole life, ultimately there is no escape from any of the people who found (and still find) me to be such a nuisance, so unworthy of kindness or thoughtful consideration.

I have considered explaining to my estranged family that I have Aspergers, in the hope of some understanding, but I can only see it being used as another stick to beat me with, so I remain silent, as always, and let people think the worst of me.

THE SURVEY IS NOW CLOSED.Thank you very much to everyone who took part.
Ad hoc results are being tweeted @spectrum_life, and full results will be published in due course.

If you would like to take part in future research, please subscribe to our “research” newsletter (see right-hand column). Your subscription details will not be linked to any survey you subsequently complete, and your anonymity is guaranteed.

Original Post (published 9th January 2014)
Many autistic people experience some kind of bullying/abuse during their lifetimes.

We have compiled a survey, on Survey Monkey, to explore these experiences in a little more detail. If you are autistic, or think you might be autistic, we’d be very grateful if you would take five minutes to look at these 10 questions, to let us know a little about your own experiences. None of the answers you give with identify you in any way, and your anonymity is guaranteed.

How we are defining bullying and abuse:PHYSICAL abuse doesn’t need to involve black eyes or broken bones; it also includes ANY kind of unwelcome physical contact, e.g. being pushed, hit, slapped, poked/prodded, pinched, spat at, having your hair-pulled, etc. – even if the other person says he/she is “just joking” or “just mucking around”.

PSYCHOLOGICAL abuse includes: being called names and/or made to feel small or humiliated, being threatened, feeling you have to do things you don’t want to do [or can’t do things you want to do] to keep someone happy, having your belongings taken and/or damaged, having someone checking your phone or emails, or always wanting to know where you are and who you’re with, being prevented from seeing your friends/family, someone playing ‘mind games’ with you, sulking with you until you give in, being told “you have no sense of humour” or “you are being unreasonable” or “irrational” when you object to any of the above.

SEXUAL abuse includes: you having to endure ANY kind of kissing or touching that makes you feel uncomfortable (even if you are in a sexual relationship with the other person), and/or sexual contact that you don’t want, but feel you can’t say no to (because of threats, sulking, etc.). It includes non-consensual sexual contact with you while you are asleep, drunk, or under the influence of drugs.

Huge thanks to everyone who took part in the Autism & Counselling straw poll (it’s still open if you haven’t voted!). I initially had the idea whilst preparing an essay on research methods (and I wanted to how the results of such a poll varied with sample size), and chose ‘autism and counselling’ as it is a subject close to my heart: after 111 responses, 77% of us have accessed some form of counselling at some time. As Life on the Spectrum is a worldwide community, it is impossible to compare these figures with the general population in any valid way, but the UK government’s Social Trends report for 2007 (1), says that 16% of adults in England had suffered a common mental disorder* in the week before the survey, and and 1.6% had accessed counselling.

For those who are interested, the graph below demonstrates how the results varied according to sample size, producing a 17% difference between ten and fifty responses. The yes-vote seems to have settled at between 75 and 77% after sixty-four votes. I will leave the poll in place to see how (or if) the results change with an even larger sample.

I hope to conduct future research into many aspects life with autism. If you are autistic (either formally, or self-diagnosed), and would like to help, please sign up to our research newsletter in the sidebar! Thank you!

In an effort to get some idea of whether autistic people access (either private or publicly funded) counselling or not, please take a moment to answer the question in the sidebar to the right. Thank you!

(I plan to use the numbers produced by this poll to demonstrate the accuracy, or otherwise, of sample sizes, for a university assignment.)

I’ll also be doing more research on the efficacy of various forms of counselling, and the role of autism in the therapist/client relationship, later this year. I’ll be very grateful for your participation again in the future, and if you’d like to help, please get in touch via the “contact” tab above, or subscribe to our research newsletter in the sidebar :o)